Posts from January 2014

My last entry about Rebecca and her chemotherapy was unexpectedly—well, I suppose “popular” is the technically correct term, though it carries a lot of positive connotations that I really don’t think apply. It drew a fair bit of response and social-media sharing, anyway. As a result, I wonder if I left new (or even returning) visitors with the wrong impression.

So let me be clear: Rebecca is not necessarily dying soon. We don’t have a “time left to live”, not even a hint of it, because the goal of her treatment is to eradicate the cancer and give her many, many years of life. So far, we seem to be on track for that, though of course we can never really know (but then, who can?). Her outburst about not ever being eight was not because she’d been told that she might die soon. We were deeply shocked to hear her say it. We know that kids hear more than we think they do, and we know she’s whip-smart, which is why we tried very hard not to talk about her survival odds in her presence. Still, it’s easy to think that someone of Rebecca’s youth doesn’t grasp the idea of mortality. We thought that she knew it was serious but not that her life was in ongoing danger. We were wrong. A few days ago, she told Kat that she’s afraid to die because it would hurt me forever. She’s not wrong.

Then again, given her age and intelligence, maybe she would be having these sorts of thoughts anyway. We’ll never know if it was forced on her early by her cancer, or if in a world without cancer she would have thought the same thing at the same age. It’s too easy to put a “because cancer” label on every moment of breathtaking insight, every time she steals our breath with her wisdom and her fears, every outburst of irrational rage. We try really hard not to do that, because doing so cheats her of her agency and keeps us from seeing her for herself in all her facets. We have a child, not a patient, and if it seems like that would be an easy distinction to maintain, it isn’t. Not even to those who have lifelong experience maintaining it.

That said, most of the time she’s a normal five-year-old kid, as full of joy and mirth and energy as ever. She’s tolerating the chemotherapy pretty well; her side effects so far are minimal, with no vomiting or other major GI problems, and she even still has a mostly-full head of hair. Sometimes she gets listless or feels wrung out after treatment, but not always. She had a bi-weekly intravenous treatment yesterday, in fact, and after dinner she was charging around the house with her brother and sister, laughing like a maniac the whole time.

And we let her, even though we probably shouldn’t have. Her treatment yesterday went fine, and her blood test came back with some really great numbers. The down side was that when we mentioned she had rebuilt her physical strength and skills to the point where her gym class coaches wanted her to move up to the pre-team class and start coming twice a week, the oncology team had to give us some bad news. One of her chemotherapy agents tends to weaken bones during treatment, and also multiply the chances of internal bleeding after blunt-force injury—like, say, falling off a pommel horse and striking the mat with her head. Or possibly fracturing ankle or leg bones with a dismount landing, or splintering vertebrae in a somersault. So no gymnastics, they said. Or, more accurately, they said that we have a choice: we can stop the gymnastics or stop the chemotherapy.

We cried a little bit as we told her, knowing how much she loves gym class and being there with her best friend. Rebecca did not cry. She just looked sad, and then insisted she only wants to go to school, not to gym. We probably cried a little bit more at the near-certainty that she was lying to try to protect us, which is heartbreaking all on its own, just as it was to hear of her fear of hurting me forever. We should protect her. Never the other way around.

Yet another case of three steps forward, two steps back. Just when we thought we were going to be able to add another bit of normalcy back, that door was closed to us. In some ways that makes it even more frustrating, to see the goal so close ahead and then watch it slip far away.

I wish we could say that we are unique, or that our situation is as terrible as it ever gets. Neither is anything remotely like being true. Thousands upon thousands of children the world over are afflicted with life-threatening conditions like cancer. Some of them have much better odds than Rebecca; others have far worse. Some lay in bed all the time, without the energy to sit up, let alone play with siblings. Some have no immune system left, others no appetite at all, still others live in constant pain. Some are already terminal, and if you want to know what I believe is the absolute hardest thing a parent can ever do, it’s to tell your son or daughter that they will die very soon, and then sit helpless with them and their siblings as they do. Superman Sam’s parents recently went through that hell. They had to bury their child’s body and stand at his graveside with their other children. As thousands of parents must, every day.

I cannot imagine how they survive, a month now after their son died. I know how they survive, but I can’t imagine doing it myself. I can’t imagine finding the strength to do it, even as I know that I would, because I would have to. That’s what I tell people when they say they could never be as strong as us in this situation: yes, you could. You would. You’d do it because you had to, and wish hard for the day that you could stop.

So yes, our lives are much different and demand more strength now, and we often have to hear and do things that break our hearts, but it could be so very much worse. We have hope where too many are long past that point, support and love where too many have little of either. Our difficulties are like a mill pond compared to the ocean of suffering that others endure. If you would spare a thought or a prayer for our difficulties, spare ten for theirs. Spare them more tangible support, if you can. All we have are each other, and only we can help those who so desperately need it.

Last night, Kris Straub of webcomic fame, most recently the excellent Broodhollow, did something that I’d always suspected might be possible, but hadn’t figured out where to go to make it happen. He showed me the way, and so I (once again) bow to him in reverence. I’ll illustrate what he did with the following image of a two-item list (more on why I used in image in just a moment). The first item in the list uses markup and CSS. The second does not.

You can see the test file that was used to produce the image, and you definitely should see it if you’re thinking about using this technique. It’s not as straightforward as might first appear. For example, the reason I have an image with a link to a testcase is that some combination of WordPress, PHP, or MySQL refuses to allow me to put the raw Mathematical Alphanumeric Symbols into this post. Every time I tried, everything from the first such symbol onward was just dropped completely when I saved a draft of the post.

The fun part is that any service that supports Unicode and doesn’t have those sort of glitches—say, Twitter or Facebook—can serve up those symbols in a tweet or a post, thus allowing you to add italics, boldfacing, fraktur, and other “faces” to your social networking. At that point, it’s up to the user agent and OS to render the symbols, if they can.

And lots of them can, at least on the desktop. My limited survey revealed that most Windows 7 and 8 browsers are fine, though not Chrome; Windows XP, on the other hand, saw broad failure. OS X browsers, no problems; ditto various flavors of Linux. On the other hand, iOS and Android mostly saw failures, but apparently some clients were okay, so the failures might be problems with individual clients and not the OS. Nobody let me know how Opera Mini did. If you’re inclined to report your results for the test file, feel free in the comments, though please check to see if your browser/OS combo has already been reported before you do (and if you got a different result that someone with the same combo, definitely report your result!).

The real problem likely comes in accessibility, as Chris Lilley pointed out: “Chance of screen reader understanding, near zero.” Could someone test that theory and report the results in the comments? I’d be very interested to know what happens.

I’m not recommending that people do this, to be clear. The Unicode support issues alone are enough to discourage use, and if the accessibility problem holds, that’s an even stronger disincentive. But who knows? Maybe in a few years, both problems will have been resolved and social media clients will let us boldface, italicize, fraktur, and even double-stroke our little e-missions.

Last night, not for the first time and probably not for the last, we made our five-year-old choose between drinking poison and having us force it down her throat. We did so calmly, patiently, quietly, never raising our voices or becoming angry. We’ve had too much practice at this to make the mistakes of the early days. Perhaps with more practice we can somehow find a way to make it a game, some way of making it all easier. For now, we simply let her know, with quiet patience and love, that this is not optional, and if she doesn’t take the poison herself, we will make sure it gets into her.

It isn’t always a long struggle. Some days she poisons herself without complaint, getting it over with in order to get on with life. But not very much, of late.

The poison in question is temozolomide, a chemotherapy agent that’s specifically used to treat brain tumors. I once read the label, with its biohazard trefoil, and stopped when I saw the word “cytotoxin”. That means “cell poison”; it attacks cells that are dividing, as cancer cells always are. But it attacks all dividing cells, not just malignant ones. A growing five-year-old has a lot of dividing cells, and we are poisoning them all. We just hope that we’re poisoning the cancerous brain cells more than other cells.

But her brain is trying to grow, too.

Temozolomide is an oral medication, usually in capsule form. However, for kids who haven’t learned the trick of swallowing four large capsules in quick succession, its toxins are suspended in a gooey liquid compound that tastes vile. I know; I tasted it, so that I could better understand her struggle. Worse still, it can’t be flavored. We’ve asked—begged—more than one pharmacist, but it cannot be combined with flavoring agents. So she takes her poison straight. At home. For days at a time.

When she asks why she has to take something that’s “too icky”, we remind her (even though we know she knows why, just as we know why she asks) that it’s to keep the “bad rocks” from coming back. That term is a holdover from when Rebecca was three and Kat had to have some masses removed from her abdomen, and “bad rocks” was the best way to explain to Rebecca what was being taken out of her mommy. We thought she was too little to have to worry about cancerous growths, so we simplified things to make sense to her. We still think she’s too little to have to worry about cancerous growths, but we can’t be euphemistic any more.

And if we ask her what will happen if the bad rocks come back, she says, “Not telling” in a small, scared voice. This is actually a common reply from her, but usually it’s said with a smirk and a gleam in her eye, the one that kids get when they think they’re getting away with something and it seems like the biggest joke in the world. When she refuses to tell us what will happen if the bad rocks come back, it’s because she understands all too well. She understands better than we can bear.

We know she understands because when we were home between her surgeries and the radiation treatments, twelve days of having the family together in the midst of everything, Rebecca got very mad at her sister for not letting her play with a toy. “It’s for kids eight and up,” Carolyn said, reasonably. Rebecca, of course, found this line of reasoning lacking, and came storming into the kitchen. “Carolyn won’t let me play with that toy and I have to play with that toy!” she shouted. We explained that it was in fact for older children, and that she certainly might want to play with it, but that wasn’t the same as having to play with it. “I have to!” she shouted again, her voice rising almost to a scream, breaking with angry, anguished sobs, “I have to play with it now because it’s for kids who are eight years old AND I’M NEVER GONNA BE EIGHT!!!”

I can think back to the first days of her illness, lying almost unconscious with so many tubes leading into and away from her, with relative dispassion, as if analyzing a movie. It might even seem like I’m doing that right now. But that moment of anger and fear erupting from our five-year-old daughter brings me to tears every time I remember it. I’m typing this part with tears streaming down my face; it’s taken me this long to be able to come to a place where I can write about it at all. Even now, I want to throw up. I want to die, if that could somehow save her.

Instead, I have to, we have to, make her poison cells all throughout her body and especially all throughout her brain in the hopes of killing off the cells that might kill her. All the other cells that die in the process, the good cells that are trying to grow more curly hair and develop her brain and lengthen her bones and help her grow up, are collateral damage. We tell ourselves that those innocent, beneficial cells are acceptable losses, and hope that it’s true. We hope that the damage we do trying to save her doesn’t end up killing her later.

In the end, she took the medicine herself, as she always does, choosing to be in control of how things happen to her. It took several false starts; for each, she calmed herself by sitting up straight, closing her eyes, and taking a deep breath. And then, as soon as the syringe touched her lips, she crumbled back into sobs, her body shaking with visceral rejection and misery. Not anger, even though it would be easier for us if she hated us for what we keep doing to her. If she blamed us for making her do this. It would be easier to be targets of her anger than witnesses to her hopeless, knowing, abject misery.

Finally, after all those tries and stalling tactics, she made her choice. She squared her shoulders, slowly put the syringe to her lips, and pushed the plunger, drinking it all down in two audible swallows. She then immediately drank half a cup of Gatorade in an effort to mask the taste. She doesn’t usually like Gatorade, but it’s what she asks for to go with her chemotherapy. So we give it to her.

But only after she’s poisoned herself.

People ask us how we’re holding up, and when we say we’re doing pretty good, we’re being honest. We know that we’re lucky to have to poison her, just like we were lucky to have to irradiate her. We’re beyond grateful for those opportunities. We are. But we’re also painfully aware of the nature of what we’re doing. We feel every last drop of the horror it is to be grateful to be damaging our baby; to have the good fortune to force her to choose, day after day, whether she will poison herself or we will do it for her.